Connect
← Return to Anyone here dealing with peripheral neuropathy?
Discussion
Anyone here dealing with peripheral neuropathy?
Neuropathy | Last Active: Dec 26, 2024 | Replies (3053)Comment receiving replies
None of my numbers ever reached positive; ANA, or any inflammation indicators. But I the numbers, including RA factor, have been generally more than half and continued to increase towards positive over the past year. (Tested 3 times)
No, I don't think the pain/ numbness has to do with fibromyalgia. They said I have fibromyalgia. I've been screaming from the mountain-tops that it's not fibromyalgia and they wouldn't listen. I JUST left from a muscle biopsy so I should have confirmation on my autoimmune disease. I'm currently on no pain meds. I hav tried gabapentin and duloxetine and neither touched my pain.
You are right. The numbness is a whole other beast. I'm only 38; I can't grasp things...I can't feel things...I have to have a special case on my phone. I hold it for a bit then I lose feeling in my hands. I hear [I'm] "too young for this" way too often. I don't throw that pitty party because there are children with the disease that it appears I have. And if people as saying that I should snap out of it, I'd like to do that too but I need some medical assistance. 😀
Thanks for the tips. Id like to get back to exercise, I was a ballet dancer and an actress but a hallmark of my autoimmune disease is weak shoulders and hips as well as organ failure. I am currently on three inhalers for COPD.
I started doing bicep curls and sitting leg lifts a few months ago but I have to be careful. Once I get good medicine for autoimmune, pain and clearance from my pulmonary doctor I plan to work out again.
Replies to "None of my numbers ever reached positive; ANA, or any inflammation indicators. But I the numbers,..."
I was a vegan until I started having kids and a pescatarian who trended towards wholistic approach so no, this wasn't medically induced. I tried for 15 years to treat my gastro and allergy issues wholistically and now I vlog about how dangerous that is so I'm kinda a pariah in the chronic illness community because people are getting on a band wagon as I am learning a lesson. (This also frustrates doctors because my organ and breve damage from not knowing I had a serious autoimmune disease all there years is so far gone and they want to suggest vitamin this and that and I've been-there-done-that.) My husband works for an enzyme company and they partner with vitamin and essential oils companies do I get my heart's desire for free.
I actually stopped taking them all in March because I think between my healthy diet and all of the supplements, that may be screwing my test results too.
I have visibly swollen ankles;which is not a hallmark of fibromyalgia. I have a ganglion cyst on my wrist, also not but also can be totally totally benign and not a major arthritis problem.
You are right, they might try to ignore biopsy results, my last rheumatologist ignored the positive skin biopsy alone and refused to order the muscle biopsy as is standard procedure. That is why he is no longer my rheumatologist. I subscribe to an info page the sent me a link to the experts on my disease in Philadelphia and they explain that with the muscle biopsy, skin biopsy, the organ failure, the neuropathy, they have enough. If the new neurologist says he doesn't, then I will become enraged. My disease has a 50-70% mortality rate and this is why...dying from preventable lung disease or throat cancer or because the autoimmune disease goes untreated.
You refer to "my disease". I had thought that you weren't certain what it is but it sounds like you are. If you don't mind saying, what is it?
Connect
The frustration of not having any smoking gun test results can be frustrating to the point of infuriating. They won't make the call on tests based on trends so that's where the chronic fatigue/fibromyalgia bucket comes in handy. Biopsies might not be smoking guns either, or so I'm told by my neurologist. Dysfunctional nerves can appear completely normal. Did they test for the more obvious, like MS? Can you think of a medication that you had used prior to your problems? Gabapentin and duloxetine didn't work for me until I trended toward numbness. Have you seen a pain specialist? A different anticonvulsant or antidepressant or combo might help. Hope that I'm not being annoying by throwing some things out there that may be obvious. There is an answer, but it may take a while to get to it.